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Mum's update

willbesurvivor

Posts: 48
Joined: Jan 2011

Jul 02, 2012 - 1:36 am

I have been posting and lurking on these boards for a long time now. My mum's original diagnosis was UPSC stage IIIC grade 3 in November 2010. She was given the all clear July 2011 and the cancer came back in the supraclavicular and para aortic lymph nodes within 3 months.

Following this mum decided she didn't want to do any more chemo and started a radical alternative therapy for almost a year and has recently found out that the cancer has spread and is now in palliative care. I asked her if she wanted to do chemo but she doesn't and I respect her choice - the doctors are also not recommending it as it was no longer curative following the recurrence in October 2011 and would just be prolonging the inevitable. She is probably too weak for it now anyway and it would just make her more sick, I have seen what chemo does to the wonderful ladies on this board. I know a lot of you would not follow an alternative therapy, however I think they are wonderful. They provided her hope when western medicine couldn't provide any. She was happy and healthy for the last year instead of sick and bald. Chemo would not have been worth it for the few extra months she might have gained.

For those of you interested in palliative care she has had the ascites drained once and a catheter put in and subsequently removed (they are horrible things you can hardly walk around with them). She is taking a low dose of morphine each day and some steroids which have helped with appetite etc dramatically, I recommend the steroids to anyone in pallaitive care who has any nausea and finds it hard to eat.

Thank you to all of the ladies who have provided me and my family with assistance over the years. My mum is far too young to be taken from us, not even 60 yet, UPSC is unforunately one of those cancers that nothing can stop if it has gotten to a certain stage.

I've been wondering how your Mom was doing, Tali, and am so sorry that she has reached this stage. I hope she is able to stay comfortable so she can continue to enjoy her days. My thoughts and prayers go out to your Mom and family.
Thanks for taking the time to update us.
Cyberhugs,
Annie

This is my first time writing into any sort of on line forum, let alone a cancer forum.

I am very sorry and sad to hear the details of your moms health issues. She is far too young and it hardly seems right. My best wishes go out to your mom and to you and to all that are affected in your family by this. I can relate to your story in a few ways.

Its a crazy thing, this whole cancer trip. I am finding this out as my mom was also just recently diagnosed with UPSC, last month. She has had one biopsy and one small surgery to confirm it. She has a cat scan the day after tomorrow and I am guessing that will let us know what stage she has and how far and wide the C has spread. Her health seemed fine and now after the diagnosis and the impending nuttiness she seems to be having some symptoms and discomfort. As well, she is not doing so great mentally as the impending news, surgery, therapies etc is a lot to wrap your head around. I have to say that I am fearful of a rough go for her. She told me that she felt a lump and some pain over two years ago in the exact area that the polyps were just recently removed from. Im scared.

I am new to all of this. I know very little about therapies, terminology, procedures etc. I know little of protocol with the docs, the tests, the ways in which to monitor the disease its progression and its recession. I am grateful to have people like you to communicate with and help me feel connected to others who have some experience with this.

When your mom was diagnosed with IIIC grade 3 what were her symptoms? How did it play out for her? How is she coping and how did you get through it all thus far?

Anyway. Any insight is appreciated.
Thanks so much and may the force be with you .

I will have my 5th chemo this week and can tell you that so far, none of my treatment for upsc has been as bad as I anticipated: surgery, chemo, even the hair loss wasn't as traumatic as I thought it would be. Hopefully the radiation will go ok. What was truly horrible was the anxiety while waiting for the biopsy results till I had my surgery. The fatigue is the most discouraging at this point. I am sure the anxiety will will return when it comes time to await the results of f/u testing. I receive much comfort from this forum and the ladies of the blue chairs who have chemo with me.

Mum had zero symptoms when she was diagnosed and we all wonder whether she would be in exactly the same position she is in now had she never even had chemo, who knows. It wasn't until they did surgery and checked a heap of lymph nodes that they found there was microscopic traces of cancer in one. A CT scan won't pick that up, it only picks up tumors of a particular size.

Mum had 6 rounds of carbo/taxol and then 5 weeks radiation with chemo every week (those 5 weeks were the hardest). Went into remission for 3 months (CA125 of 20) and then came back in lymph node near neck and a few para-aortic (in her back), only picked up by a PET scan. Once UPSC comes back and has spread it is classed as incurable.

Feel free to send me a message directly if you have any questions. My mum found the chemo/hair-loss etc very traumatic, not physically but emotionally. She said she would never do chemo again and she didn't.

Dear Foxy fox
I am going through the chemo thing now with my sis. We are worried but positive. The type of cancer they have is rare and not many people are on the boards with it. I am trying to connect with women or relatives of women with the UPSC. In chemo treatment 1 so far and she is having some neuropathy pain. I like you do not no the lingo or terminology but I guess I'll learn it. It looks like we are both in about the same boat with the time here so please stay in touch with me and we can compare some notes and help each other stay positive and focused to help our loved ones through this.
God Bless
Susan

I am sorry to hear that your sis (and you) are going through this? Its not a fun ride so far, thats for sure.

Did your sis have a hysterectomy? Did they diagnose the stage and phase of her illness? My mom is having surgery next monday to remove all her reproductive parts and I gather we will know the exact stage after that. How is your sister handling all of this? Does she like to be informed and do research etc? My mom wants to be in the dark and is happy to have me do all the reading etc. Fine for now.

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